Chomp

As the past two entries might cause you to surmise, last week I had more than my fair share of crap landing on me because I'm blind. I knew it was getting to me, but truly didn't understand how much until I bit someone's head off.
I went to a discussion group on transgendered women's issues that, from my previous experience, is essentially a fascinating discussion of gender with lovely servings of race, class, and sexual orientation politics added to the stew. The facilitator has always been extremely open to disability issues going so far as to send me an article ahead of time so I could read it and fully participate in the conversation.
Maybe my expectations were too high. Maybe my frustration level was at the boil over threshold. Maybe I'm just human and like any member of a marginalized group sometimes want to not have to educate or explain, rather having everything simply be done the "right" way. Whatever the case, I lost it.
First, in trying to make a point about something being both intellectual and emotional, a person must have tapped their head and chest. It wasn't clear initially, but through context I sorted it out. Then someone made reference to how they look. I didn't understand her point because I had no way of knowing she has masculine traits. When the same person started telling a story using facial expressions that conveyed crucial information, I put up my hand and stopped her. The conversation then went something like this:
"Hang on a second. Could you please, please stop assuming everyone in this room is sighted. It's pissing me off."
She replied, "I didn't know."
"The dog under the table didn't tell you?" I asked.
"I didn't know what the dog was for."
I said, "I know I don't look blind, but still. You can't just assume everyone here can see."
She said, "My bad."
It was awkward, I was intense in how I presented my point, and the entire room was silent for that moment afterwards that tells you everyone is uncomfortable with how someone behaved. And by someone, in this case I mean me.
I'm not even going to explain why I was justified in being upset because clearly I had good reason. I did not, however, have reason to be rude. I simply lost my cool after a week of being hemmed in by a world that assumes sight and cannot manage to think outside that particular box. I wish my ire had been directed at those who truly deserved it. Then again, when it's an entire social structure to blame, how do you vent at the appropriate entity?

Adding It Up

Over the past couple of years, as I work to sort out friendships and find some sense of community, I've learned a few things.
1. Friendships need to be equal, balanced, healthy, and reciprocal.
2. Having friendships that aren't these things is ultimately bad for me.
3. I cannot nor should I try to "compensate" my friends for the "hardships" of being friends with me.
4. As a friend, I actually am enough. In fact, in some ways, I sort of rock.
and then there's what I've figured out about social stuff and disability.
1. Most people cannot se past the fact of my disability to see the potential of me as friend.
2. Nothing I do will make me seem more or less tempting as friendship material to someone who cannot see past the fact of my disability.
3. A large chunk of those who see past the fact of my disability to me as a person are interested in friendship because I represent (to them) something as broken as they unconsciously see themselves.
4. a shockingly small number of people see me as a potential friend and also see me as a competent, vital adult.
5. All of this is because of how the world thinks about disability and how that has effected the probably unconscious thoughts of individuals.
If you add up the first and second set of things I've learned, you come up with this: I am going to have a very hard time finding friends, it is something I cannot change through how I behave, and it will lead to social isolation.
I learned an interesting fact last week. It seems that people outside a marginalized group are not very good judges of what it is like to be a part of that marginalized group. Outsiders are not able to assess degree of prejudice, significance of negative stereotypes, or amount of "suffering" marginalized group members "endure" because of their group status. In other words, people who don't have a disability equivalent to mine are not going to get it.
There's this great phrase: Disability is the responsibility of the disabled. For example, I get a print piece of mail. It is not amongst the acceptable options to call up the sender and demand they do something about it. Instead, I'm suppose to find someone to read it to me. Similarly, if I am amongst a group of people who are interacting based on sighted people rules, I am expected to find a way to play by those rules or accept that I will not be included. Should people in the group actually alter behavioral patterns so I can participate, it is done as a kindness not as a "no brainer" because of course you play by rules everyone can follow.
So, people are unlikely to see my social isolation as an artifact of disability and if they do, chances are they see it as a problem I should fix or tolerate because I'm the one with the disability.
Here's the funny thing: if you look at the social model of disability, where disability is a factor of how the world works, then the very world that is the architect of my situation refuses to do anything to deal with it. Should you look at disability from the medical model, where functional limitations based on physical difference cause disability, I am still not to blame for my circumstances, yet I am left to cope with their impact.
Now here's where I don't know if I'm being fair or reasonable. I'm angry and frustrated, and disappointed in the people who express affection toward me. The vast majority have consciously or unconsciously left me to deal with all of this on my own, yet supposedly care about me and my happiness. They will guide me around obstacles, read menus, and put up with guide dog fur in their cars, but they will not do anything to alleviate what I consider possibly the most fundamentally distressing consequence of disability in my life – soul eating social isolation.
Moreover, any efforts on the part of others to mitigate the situation have to come from a place of love and understanding not obligation and pity. I cannot beg, offer brownie bribes, or barter bread for behavioral changes. People either get it or they don't. they either do something or they don't.
In the past year, I have pruned friendships that weren't working well. I have tried to back off from the friends I have retained because constantly asking for time and attention finally struck me as unhealthy. Should I go through another round of trimming based on those who understand and help mitigate my isolation and those who do not, I'll be down to about four friends. I'm pretty sure that's not enough for an extravert, even a shy extravert.

Left Out

This is becoming ridiculous. Utterly. Ridiculous. I just read an email promoting a concert that should have filled me with longing to attend. Instead, when I saw the "no electronics and no talking" venue rule, I immediately thought, "Excuse me? Blind people might need talking to describe visual aspects of the show and we might need our electronics to get there or to read while we wait. Are you planning on banning books and newspapers too?"
It would seem that I cannot avoid noticing policies, procedures, and language that excludes disabled people. Everywhere I turn, everything I hear, the ways disabled people are excluded have suddenly become impossible to ignore.
Here are some that happened in less than 48 hours:
1. Everyone in the world is posting photos to Facebook without any descriptive tags. The latest craze is to "repost" those you like, again without descriptive tags..
2. My local radio station of choice is giving away Hawaiian vacations. To enter, you must input words into an inaccessible form on their website.
3. A musician who had to have seen me enter the tiny room as well as get up and use the restroom didn't provide context for visual gestures etc in his patter.
4. A list of the "civil rights movements" of the recent past included everything except the disability rights and immigrant rights movements..
There has never been a time when I did not see such practices, but suddenly they have become commonplace. While it is conceivable that there has recently been an exponential increase, it seems more likely that I have somehow changed. Honestly, it would be great to change *me* back.
Noticing exclusionary practices when you are a part of the excluded group is upsetting. The most benign interpretation is that you never entered the mind or minds of those shaping the procedures. For a while, it is possible to believe that is exactly the situation. Over time, faith erodes and you begin to wonder how anyone can not consider disability with such persistence. The question running through your mind becomes, "Is this willful ignorance?" At your most skeptical, you contemplate global conspiracies to eliminate people like you from the human consciousness. After all, out of sight is typically out of mind and what can't be seen can't be disturbing.
When your perception of such circumstances increases, it is akin to constantly bumping your injured thumb on EVERYTHING. Metal ease is no longer possible.
This is in fact impacting my quality of life. Literally. I am trying to make peace with the continual bombardment. Perhaps if I assume I'm going to be left out I can find some sense of belonging. I am, at least, in good company.

Borders of the Mind

This past weekend I attended the 40th anniversary celebration of the dedication of Friendship Park. (If you aren't familiar with it, go here.) The original concept was to create a space where people from the Mexican and U.S. sides of the border could come together to create community. It became a place where families would picnic, grandparents could meet their grandchildren, and the power of an artificial barrier to separate could be diminished by basic human interaction. For years, the barrier was minimal, but in our era of terrorism fears and militarization, there are now a minimum of 2 fences and five feet between loved ones. In fact, you cannot even get within conversational distance without waiting to be 1 of twenty five people allowed into a "cage" for thirty minutes.
The celebration was about re-affirming the original intent to minimize the divisiveness of concrete, steel, and distance. As salsa dancing took place on both sides of the border simultaneously, there was tangible effort made to pretend no barriers existed. Politicians and other speakers talked of a future where people could again actually clasp hands and grandparents touch their grandchildren. The day was about reaching across borders bridging not just the physical barriers but those of culture, class, and national affiliation.
As I stood by myself, I had a lot of time to consider the idea of borders, boundaries, and the lines we draw. It was easy to jump from the bars of a cage to the intangible forces that divide people. After all, the day was about removing walls to encourage changes in thinking. So why, then, was I alone?
I went with my friend who was the mastermind of the event and thus reasonably a bit too busy to baby-sit a grown woman. Luckily I did get to hang out with his mother, who pretty much embodied the exception to every pattern of behavior I observed throughout the day. Given she raised a son who gets it, I should have expected nothing less.
In hindsight, I realized I made an unthinking assumption that an event about removing barriers would be populated by people who didn't exclusively try to banish obstructions related to national borders. I thought disability wouldn't be a big deal. I was wrong.
My inkling of the day ahead came early when people introduced to me could not figure out how to shake my hand, even after I went and actually grabbed my cane propping it next to me as a very clear signal of my disability. While people listened to what I had to say, they did not return my efforts at conversation. Manners were evident. Friendship and genuine interest were not.
When we got to the event sight, border patrol decided that the blind person's I.D. didn't need to be scrutinized and my presence attached to a person's elbow made them exempt from the check as well. At the onset of salsa dancing, the directions required functional eyeballs to follow. The Japanese man who traveled thousands of miles for the event was unable to conversationally bridge the gap of disability to speak with me though I was standing next to and clearly with his conversational partner. The man coaxing his daughter to sit atop the wall on which I also perched les than five feet distance ignored my presence even when I laughed aloud at some of the cute things his child said. Exactly one man, a border angel, seemed genuinely aware of me as a person who warranted more than the exercising of good manners.
I therefore had a great deal of time to consider the societally perpetuated boundaries we possess in our minds. The physical difference disability represents is unfortunately not conceptualized as a form of human variation given arbitrary meaning. Whether out of fear, ignorance, or callousness, disability is a line people feel unable to cross. They will work to remove the physical barriers created by nations and educate to remove the mental blocks those barriers have societalized, but they will not reach out to connect with a person "too different" from themselves. Race, class, culture, and national origin are one thing. Eyes that don't work are another. Apparently some lines are to be crossed and others are to be obeyed as if several feet of concrete and rebar stand in the way. When it comes to border politics, fear, ignorance, and heartlessness are the enemy. When it comes to disability, they aren't.
Having been able to conceptualize border fences in terms of disability, I actually now have a far more profound understanding of the situation especially on an emotional level. I know exactly how it feels to have a socially-constructed thing profoundly impact and limit my life. I guess I just wish people who see the human cost levied by concrete and steel could also perceive a flight of stairs as equally restrictive and without rhyme or reason.

Creating Disconnect

I am dissecting Dr. Brown's ideas about vulnerability and connection in relation to disability. She argues that feeling connected to other people makes life worth living and in order to achieve this, people need to be authentic and thus vulnerable. While I completely agree with her overall point, my immediate reaction was to wonder how disability fit into the picture. In my last entry Authenticity's Risk, I examined how the vulnerability is made more complex by disability. Even if it were possible to erase all those implications, societal expectations and perceptions of disability would still foster a disconnect between disabled people and our TAB counterparts. Obviously I have examined this issue before, but not specifically as it relates to connection/disconnection.

The first element is the "us/them" mentality. The physical or behavioral differences between disabled and TABs have been given a vast amount of significance that creates the two distinct groups. The artificial boundary promotes disconnect.

Then society fleshes out the us and them distinction with perceived implications such as abilities, limitations, potential accomplishments, and estimations of worth. No longer is it simply people who can see and people who cannot see. It is people who are independent and people who need help. More disconnect.

Societal structure and function also plays a role. With stair-dominate architecture, wheelchair users cannot easily access buildings and you literally have the physical separation of those who can get inside and those left on the sidewalk. Disconnect.

What about amazing? Even viewing a disabled person in a favorable light because of how they cope with their "situation" fosters lack of connection. It puts the disabled person up on a pedestal to be admired like a Chinese vase or rare bird. Disconnect.

I could probably go on for quite some time about how societal expectations and perceptions of disability foster disconnect, but I shall leave that as an exercise for the student. Rather, I want to think about this from a more positive perspective. Is connection across the us/them gulf possible?

Aside from the obvious solution of ridding ourselves of societal expectations and perceptions of disability – filling in the gulf -- I believe there have to be more feasible strategies.

Maybe my pessimistic nature is showing because I can only come up with methods requiring TABs to take action. Unfortunately, history has proven that TABs do not go out of their way not as a conscious choice so much as a factor of priorities and scarce resources like time. Still, what happens if the TAB hangs out on the sidewalk with the wheelchair users who cannot enter a building? Connection.

There have to be ways to erase the disconnect society has created around issues of disability. If you can pull it apart, you can put it back together, right?

Where Law Cannot Tred

In any civil rights movement, political activism has a key role. Same sex marriage is only one example of political activism utilized to change laws that will directly benefit individuals. Without political pressure, the American's with Disabilities Act would not have become law, but as so many pointed out on its twentieth anniversary, progress hasn't met expectations. The position people with disabilities inhabit in our society still reflects a second class citizenship where we are not full participants in the greater world. Why?

Disability, as a marginalized group status, is unique for a physical difference and/or "inability" is readily identifiable. In the nineteenth century, we saw how a tangible bodily variation effected societal status. Phrenology – the practice of determining traits such as intelligence based on the size and shape of the human skull – was used to rationalize the oppression of blacks. Today, those physical differences amongst the various races are considered irrelevant. On the other hand, disability is commonly defined as an inability to function in two or more major life areas such as school, work, mobility, and socially. Thus, group membership provides All that is necessary to justify our second class citizenship.

If my status was entirely based upon and solely limited to the fact that I cannot see, I might be willing to accept my position, but this is not the case. Take a moment to really consider this. How, after all, is my intelligence or competency in question simply because I cannot see? A person with a cognitive disability might be limited in terms of intellectual goals. Jobs requiring manual dexterity or physical strength are still legitimate options, yet an entire system of social services agencies exist just to convince employers to hire people with such conditions. What I cannot do has little in common with the beliefs that characterize my social status.

Society takes the inability – a fact – and adds what it perceives to be the implications of that truth. These perceived implications are based on fear, ignorance, and even well-intentioned compassion. Sometimes, as with blindness, it's inaccurate conclusions such as sight is necessary to bake. Other times it's more subconscious, such as fear shaping conclusions. The discomfort felt around a person with Down's Syndrome minimizes a desire for contact and the assumption that the individual has nothing meaningful to contribute because of their intelligence is an easy excuse. Even compassion leads down an erroneous road for often Deaf people are thought not to enjoy music and left out of invitations to go clubbing. (FYI, the base in of loud music can be felt.)

This crucial element of implication in the chain from difference to discrimination cannot be attacked with laws. It is embedded in the minds and hearts of people, perpetuated by what we teach our children, and magnified by a rigid societal structure. (Rather than embracing the idea of ramps, people are physically barred from public spaces, then devalued because they cannot access the places necessary to, say, perform a job. If disabled people are to be freed of their second class citizenship, hearts and minds will need to change.

Consider two pieces earlier published in this blog. You Can't Play gave a list of ways people like me are relegated to a lesser position and very few can be fixed by legislative act. Is There Disablism in Dating? argues that attitudes about disability subtly shape partner preferences. Is Congress going to pass a law that requires people to find me appealing as potential mate?

On the other hand, if we can alter the implication portion of the equation, it will ease the way for legislation or make it less necessary. After all, a law is only needed when people aren't going to do the right thing on their own.

Does this mean I think political activism is pointless? No way. I do believe that shifting how people conceive of disability deserves more effort and attention. WE need spokespeople that immediately pop into American's minds when they think about disability. How many of you know who Judy Heuman is? Justin Dart? Steven Drake? I'm certain Ellen Degeneres and Jesse Jackson are both known to you. Can you even think of someone with a disability who is in the public eye changing how society perceives physical difference?

With this blog, I try to be one of those people, but first someone must stumble upon it. Many disabled folks are doing the exact same thing – using the web to educate. Sooner rather than later, I believe we will reach some critical mass and a few articulate disabled people will emerge from the cyber world into real life. Making use of all the lessons I've had about "positive language" and manifesting what you desire in your life, I'm jus going to put out there that I will be one of those people.

American Citizenship

Yesterday I went to my local polling place and voted. For the first time since 1996, I was unfettered by either pragmatic or attitudinal barriers. It may seem like such a small thing, but it is anything but.

In 1996, I realized my new status as a totally blind person meant I would have problems voting independently, so I began researching what accommodations would be provided. None. I had to fill out my ballot by instructing another on how to complete it. Offending my every sensibility, I refused because I possess a strong belief that how I vote should be between me, myself, and I only shared with those of my choosing at the time of my choosing.

Lawyers were necessary to force implementation of a simple method by which I was easily able to vote. It was also the last time in ten years that it would be possible to have a good experience.

When I moved to California, I researched my options and again found I was denied a secret ballot because of my disability. Like in Massachusetts, I contacted all the right people, but by then laws had clarified my "rights" and a secret ballot was not one of them.

It took the Help Americans Vote Act of 2002 and its requirement that machines be accessible as of January 1, 2007 for me to walk into my polling place and vote privately. Between 1996 and 2007, I remember voting exactly once in the 2004 presidential election. Since 2007, I have voted in all general elections and many primaries.

It may seem like a small thing to have a secret ballot, but anyone with a knowledge of constitutional history is aware that our founding fathers expressly wanted those who voted to do so unfettered by pressure which meant a secret ballot. Unfortunately, it took until 1920 for women to even get the right to vote, 1965 for us to address the issue surrounding blacks voting, and 2007 for disabled people to be able to do it with the same sense of freedom white men have enjoyed for over two hundred and twenty-five years. Collectively America should be ashamed of itself.

As we all know, laws only do part of the job and my voting experiences since 2007 reflect this. My polling place was staffed with the same set of elderly people for about three years. It often took more than two people twenty minutes to set up the machine. After a couple of visits, I was recognized upon sight and if I had missed an election, it elicited comments. This did not give me a sense of privacy. Exercising my right to vote meant excessive waiting, being clucked over by pitying people, and having my voting habits noted.

Yesterday, I had to force myself to walk the several hundred yards to vote. Guess what? There was a staffing change! Nobody acted like they knew me and the machine was ready in under ten minutes accomplished by only one person. It was amazing. For the first time since 1996, I felt good about voting. I had the extremely rare emotion of pride in being an American.

Seriously, why does being a Disabled American mean I feel alienated about 95% of the time? The simple act of voting like everyone else should not be a struggle. Being disabled should not be such a fight. Yet in the United States, especially in these economic times, we collectively live on the edge with unemployment rates that are six times the national average, benefits that are being cut, and the laws designed to force our right to access ignored by the very government that penned them. I know having food on the table of every American comes before my ability to vote comfortably, but neither issue is being addressed instead the debate is over whether or not to increase taxes on the wealthiest 1% of our population.

Can we declare a temporary time out while everyone evaluates their bad behavior and figures out how to do better? It works on four-year-olds.